4

I think that’s well understood

I didn’t want to write this, I didn’t have it in me. My brainiversary blog posts are normally fairly upbeat affairs with a nice message and a catchy poem or quote. But in all honesty since July I’ve been feeling anything but jaunty. I didn’t really want to start my next year of recovery on a bum note but here I am.

I then realised that it’s ok to not be ok and it’s even more ok to express that. There are loads of us who are not ok right now. To pretend I’m something that I am most definitely not right now does myself and others a disservice. I’m not entirely sure where this post will end up, so I’m just going to write and see what happens.

The duvet of safety has become my home once more as about 95% of my time since July has been spent underneath it, gestating or incubating or whatever else is boring and still. I’ve got up when I’ve needed to attend something such as my PIP tribunal (which incidentally, I won) but gone straight back to doing my best impression of a plank of wood as soon as I get home. Even the sweet victory at my tribunal got buried underneath the layers of bleurgh that currently hover around my atmosphere.

There are many reasons for the reappearance of my ennui and despair, some that I can put my finger on, others that are hidden within the folds of my temporal lobe (some brain lingo for you there). One of the obvious reasons is that my brain is damaged, mood change 101 right there. Other reasons are the upcoming anniversary that always chirps in, a longer than usual bout of fatigue and a pervasive feeling of stress that is hanging around. There are other reasons that are making me particularly vulnerable due to factors mentioned above. This is stuff that just makes me break inside and feel impotent because I can’t help. When I’m low like this my shell is fragile and I just can’t cope with anything, I know all the advice about worrying about things only within my realm of control but there are times such as now when my faith in myself and humanity goes missing.

I feel so trapped at the moment, trapped by my body that won’t do what I want it to do, trapped by the ignorance and stupidity of others, trapped by society, trapped by the benefit system, trapped, trapped, trapped. There just seems to have been a huge tidal wave of what I will call ‘shite’ that makes my heart hurt. Are you ready for the list of ‘what is currently making Braingirl angry and sad’? Ok, here goes; The selfish actions of farmers in Hurricane Florence territory who despite having 2 weeks warning about the flooding, decided to lock all their animals in cages and leave them to drown in the flood (current estimate is 3.4 million lives) all treated like commodities they can claim on the insurance because we think we own sentient creatures. Hambacher Forest, a 12,000 year old forest in Germany, home to 142 species regarded as important to conservation, casually being torn down right now by a company called RWE for coal mining. The badger cull being rolled out across the UK, where farmers are being offered money to catch and shoot badgers in the head for no concrete scientific reason. Kaporos festival in New York, basically a chicken slaughter festival where thousands of lives are taken and dumped on the streets all in the name of religion. Then finding out 5 species of bird have recently gone extinct in the Amazon due to clearance for animal grazing for an effing beef burger (I’m looking at you MuckDonalds and you can shove your new vegan burger up your golden arches). If this doesn’t make you angry then you’re not paying attention.

This my friends was all in the month of September. This stuff goes on and on and on and yet we still as a society do absolutely nothing (and those that do get the most hideous abuse on social media by people who think ‘bacon tho’ is a clever and intelligent response to a call for compassion). Well I’m fed up mateys, totally fed up. I want to join the Hunt sabs but I can’t, my brain won’t let me, I want to go to protests, but I can’t, my brain won’t let me. I want to liberate animals, but I can’t, my brain won’t let me. All I can do is the moral baseline of being vegan and supporting those that CAN do what I can’t. I can’t be silent anymore. If you’re on Instagram follow @thesavemovement @animalliberationfront @unoffensiveanimal @undergroundbadgersyndicate show them some love and support for being on the frontline.

I massively digressed there but after more than 2 months of inertia and frustration getting that out was very therapeutic! Where do I go from here? I try to reason with myself and give myself that pep talk about feeling what I feel and being kind to myself and all that jazz, so here I am, with you, feeling my feelings. Despite everything I am usually fairly upbeat and progressive, I usually have an inordinate amount of hope in the goodness of humans but right now I want to give everyone a bloody good rattle, WHAT IS WRONG WITH YOU!

I went to my homie (am I too old to say homie?) Rumi for some good talk, here’s what he told me.

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How appropriate for just after the Autumn Equinox, dead leaves a-dropping all over the place. I suppose for my 6 year brainiversary it’s time to let the dead leaves drop, time to drop toxic people, toxic mindsets, toxic habits, drop sitting in my own insecurities about how I’m received and if it offends people and start to speak my truth. I need it and my furry, feathered and scaled brethren REALLY need it. Face year 7 in its face, stop stirring your own stew Braingirl and rule your world from your bed if you have to.

P.s. A small candle of good news this month was that I passed my final Horticulture exams with a commendation. All that work was worth it.

This song has been percolating around my noggin for weeks, here, you have it.

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4

These things take forever

I can sense Autumn in the air, I can smell it. We had a glorious Summer, which served as a battery charger for me but also gave my anxious brain opportunity to worry about the damage we are doing to our beautiful earth. Too much heat, not enough water, it’s time to drop those selfish habits folks.

The last time I left the house and went further than the end of the drive was the 6th July. I dipped outside briefly in this time, not often, to check on my veggies and catch some sun but every single step drained me. I’ve been in bed for over a month, the longest most testing time I’ve had for years. I always knew my recovery would peak and trough but I thought at least that those long dark days of despair were much reduced. How wrong I was, it’s like my brain knows when I’m too comfortable and decides to remind me just how out of control I am. Maybe it’s a pattern that will repeat until I JUST BLOODY LEARN to stop dropping into old habits, or maybe, more realistically it’s the nature of living with a brain injury. Funny that I can STILL forget that sometimes.

So the past month has been spent in partial darkness, listening to paranormal podcasts, staring at the ceiling and crying. I was at points, at the very edge of my mind, hopeless, frustrated, scared, in that liminal space between living and ceasing to exist. I’m slowly surfacing once more, there’s a gentle coming together of mind and spirit that is one of the most hope-filled feelings I’ll ever experience. I thought that was it this time, I wasn’t coming back, so when you do the relief is palpable.

What can be done at these times? To be frank, not much. I accept what is happening and let it do it’s thing. I know it eventually passes. Aside from that I rest, I rest like a sloth taking some time off. This is all that helps, I am too fatigued to move so anyone who tells me I need to have  a short walk to energise myself is told in no uncertain terms to eff off. It’s more than enough for me to make sure I’m not peeing myself. I’ll say this louder for those at the back HAVING FATIGUE AFTER A BRAIN INJURY IS NOT THE SAME AS BEING TIRED. Oh to only be tired!

Now, taking time out from the world to fully rest is not ideal in some aspects, it’s a long time out of action, things go undone, life gets unlived and you become dissociated from everything. I didn’t know what day it was and when I looked in the mirror, it took me a while to realise that it was me looking back. Due to the insular nature of this aspect of recovery, I also don’t reach out to people. A time when I need it more than ever. There’s a few reasons for this, one being that I’m just too knackered to interact but also there’s the fact that there’s nothing anyone can do so I don’t want to bring anyone down with me. I realise these are just excuses I tell myself to avoid being vulnerable and believe me, at these times, I am massively vulnerable.

I ended up emailing The Samaritans, it was a strange experience. Useful but also somewhat robotic. It helped me through the hump but also made me think about how despite writing this blog and attending psychology I’ve still never shown the guts of all this. I’ve never fully raged about how devastating this TBI has been. Showing such depth of emotion can make people uncomfortable, they don’t know what to say or do and can often say things that make you feel invalidated so you end up not bothering.

I think next time I’m alone in the house I’m going to scream my lungs out. I’m going to shout every single swear word I know and expel that energy that is swimming around in my tummy and chest. The thing I have noticed about this layer being removed though is that my passion for music is back. I am more focused and determined to play guitar and sing again. More so than I’ve ever felt. Maybe it was just waiting in hibernation ready to be catapulted outwards.

Listen to: First Day of my life – Bright Eyes

 

 

 

 

 

0

Leave it to me

Our Winter this year was a long, cold and depressing one. It never seemed to end and kept dipping back down into misery after it had fooled us with a day or two of warmer temperatures. Then Summer arrived with a big glittery explosion about 4 weeks ago. It’s been hot, bright and energising. Now I can point out the parallels between the weather and brain injury recovery but that’s too obvious right?

Whilst enjoying this beautiful, bountiful display of solar power there have been significant changes occurring in my life. As you know we moved house a month ago. We are settled now but it was a huge upheaval. Then this Thursday just past, I had my last college class for the Horticulture course I am about to finish in 9 days when I do my exams (actually I need to be revising now but I’m procrastinating and writing this instead).

I’m currrently experimenting with a new routine that occurred after a day I had of feeling incredibly angry and despondent about everything. I was snot-crying and shouting at myself, just so sick and tired of the ‘stuck-ness’ – the big pause that occurs with a traumatic event or chronic condition. So I gave myself a huge kick up the arse and told myself that if I want to see change, I have to make it. Hard when your reserves of energy don’t allow for massive leaps but my small steps are fine enough for me.

I suppose I wanted to write this post to convey the vulnerability that I feel, that we all feel when life has come to a point where it’s offering up another one of those pesky crossroads. Neuro typical me would barrel through like a tank, just following my gut and taking no prisoners. Wonky brain me overthinks, gets scared and second guesses what I need to do. Whilst I was studying at college I had something to focus on, a purpose and I suppose to some extent something to hide in, a place where no decisions had to be made. Now I keeep getting asked what I’m going to do ‘next’ now my course has finished and to be honest – I have absolutely no idea.

That though, is not the answer people want.

So I get sent into a tailspin thinking I have to have all the answers and that there has to be something to go onto. All those old feelings of failure and panic because I haven’t put anything in place for ‘next’ and ‘next after that’ and ‘even more next after that next’. Then I pull my head out from my bum and remember that all that kind of nonsense got confined to the bin after my TBI. That striving and rushing and forcing outcomes. A place where a lot of people are still stuck because it’s hard to conceive anything outside of the lifestyle we are drip fed on a daily basis.

I may have mentioned this before but I can’t remember, it’s a Shamanistic belief that people who endure huge trauma are born again into magic. I like that. I like the idea of magic growing after massive loss.

Surviving a trauma can certainly give you a new perspective on life, I find a lot of the time that the things people do and say baffles me. I can’t understand why they are fighting themselves daily. There’s also definitely a huge part of society that I just don’t take very seriously anymore. This is incredibly freeing but also makes you feel like an alien. Especially when everyone can seem so angry about nothing.

I’m at a stage now where whatever is next for me is whatever comes along and gets my attention, I have to not go back into that urge to solve and control. It feels a bit like limbo and that can feel scary, maybe it’s time to fall into that fear.

Track: Guaranteed – Eddie Vedder

2

“They say I got brains but they ain’t doing me no good”

I’ve not really been in a time or headspace to write any posts recently. Lack of inspiration, lack of energy and a tsunami of ‘life events’ have prevented me doing anything else.

Firstly it’s May and someone needs to tell the sun that. We are having small breakthroughs of nice weather punctuated massively by grey, drizzly, cold and miserable shite. This does not help my mood or my energy. At all.

Then there’s been family stuff, exam stuff, legal stuff and the biggest humdinger of them all was 2 months ago when our landlady told us with regret that she is selling the house we rented. As we all know with the ‘law of the way things are’ stuff happens in life ALL AT ONCE. Pre injury me would don my uniform and fire fight with the best of them, with a POW and a CRASH I’d see off all enemies and then go and have lunch. Post injury me and my brain just says “aw dude, this IS NOT what I’m down with anymore, I’m just going to go and nap”. My reserves deplete very quickly and I’m zombie braingirl shuffling through peril whilst looking for a hiding spot.

As you can imagine when we were told that the house was going on the market, I just crumpled, literally and figuratively. I sank to the floor and cried my little heart out. It brought out all my feelings of vulnerability, of feeling unsafe and at the mercy of the world. I was losing a magical place where I could heal and feel safe, a place that held me when I couldn’t hold myself and where me and Mr Braingirl loved enough to get married in the garden. I needed time to process and adjust, change is not an instant thing for me now, I have to wait for my brain and my energy levels to catch up. It took me about a week of feeling melancholy and paper thin before I could activate myself and then we had to solve the problem of finding somewhere new to live.

Whilst this was going on all the other stuff began to pile up too. Things that required instant action and an abundance of energy. Hahhaha yeah right. I tried to chunk thing up into steps like I was told but when everything needs your attention all at once it’s kind of difficult. So I did the only thing I could do, grit my teeth, rest whenever I could and get on with it. I was also heard muttering to myself on a regular basis “this too shall pass” this was the only way I could stem the overwhelm of everything in front of me.

So you find me here, in my new house after 2 months of packing and stressing and being sad. A new house that is in a lovely place with mountains and forests and a garden I can work in right outside the door. So moral of the story is even the tough stuff can sometimes be for the best. I tested my mettle in a big way and found some of that old fighting spirit I used to have in bundles. Don’t get me wrong. I’m exhausted and not sleeping very well due to not being relaxed and having my brain whizzing. It may take me a good while to get back on my feet again and there’s still stuff to sort out and things I have to do but I got a big shock and upheaval and I’m still here, breathing. My hair is messy and I’m a bit smelly but I’m here.

Suggested track: I jut wasn’t made for these times – The Beach Boys

3

Where do I go next?

Hello fellow headbangers and non headbangers.

It’s been a while huh? Or at least it feels that way as Winter often does. Slowly crawling through the cold dark nights until the faster warmer energy of Spring hits. February often brings a great feeling of hope for me as I feel new life begin to stir and start to think about my new season of seed sowing. My energy levels definitely match the season, I‘ve been half asleep for most of Winter, wanting to hibernate and sleep, a feeling we all get I’m sure.

Despite the urge to curl up I’ve been active when needed, I aged another year in January (I’ve started counting backwards now!) and just last week I did two more Horticulture exams, exams number 5 and 6 out of 8. I revised for two months for these exams because they were hard. Lots of Latin names and features of plants to learn. I ended up dreaming about trees and randomly had names of shrubs popping into my brain like intrusive thoughts whilst I was driving or in the shower. There has literally been no time for anything else whilst this was going on. No more multi tasking for me. One thing at a time please.

I only have 4 months left now until my last pair of exams and the end of my 2 year course. This has brought up so many strange feelings. I have LOVED doing this course, yes it’s hard, but I’ve loved it. I love the fact I’ve learnt about something totally new, I love that it meant I had to get out of bed, I love that I met new people and I love that it’s something that has felt so heart-full. Something that resonates with who I am. But this now leaves me feeling a bit in limbo, where do I go from here? When this is all over what do I do next? I know I want to continue with Horticulture but I’ve no idea how. There’s a level 3 course available but no one in Northern Ireland teaches it, it would mean distance learning via Edinburgh and hopping over there to take exams. A lot of faff right? I don’t want to learn all this wonderful stuff and just leave it lying dormant in my brain to eventually disappear.

Horticultural Therapy is a route I’ve considered but on researching it’s difficult to find just HOW you get there, no specified route, just like post-TBI life I suppose. I’m in equal parts extremely happy and grateful to have nearly completed the course but also sad and lost about it ending. This as always has parallels with how Brain Injury feels. You spend a lot of time wondering just where you go next or where you have gone or how you fit into society anymore. It’s a strange limbo too.

All this time I’ve been unplugged from what is deemed the accepted way of living, I’ve grown. Just like one of my beloved plants I’ve rooted and shooted into my own space. The further I go into discovery the more and more I know that modern living has got it all wrong. Believe me, it has. I’ve always known really but never been brave enough to step outside of it fully. My TBI gave me a chance to peep behind the curtain properly and show me what is acceptable to me to help me grow and finally learn to love myself. I never did, you see, always so hard on myself chasing perfectionism, chasing chasing chasing…….well nothing really because ultimately it was always here. As a kid I was totally uncensored and brave and in the moment then life knocked it out of me as it does with us all. The young me didn’t question about being ‘enough’ or wonder if so and so would approve, she did it anyway. I like to think some of that has come back since my brain got a factory reset.

There was also the realisation that I no longer think obsessively about what happened. There are weeks now where it doesn’t even enter my head. I can still get frustrated about my LACK OF ENERGY and my inability to sustain activity. Do I wish I wasn’t fatigued? Of course I do, but I am, so that’s where we are. I still have a cry at times but I don’t think about it every day. Therein lies acceptance. All this time I’ve been waiting for a whizz bang explosion of glorious acceptance showering me with golden light but instead what it did was slither quietly into existence. No light bulb moment just gentle, expansive post traumatic growth.

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So I reckon with lots of falling over and near drowning and howling at the storm I may have, just maybe finally learnt to surf.

3

Austerity xmas

It’s freezing cold here at the moment and I’ve been in bed for the past week recovering from an activity last Saturday that drained me. Whilst sitting here twiddling my thumbs I thought I’d do a bit of the old writing and let you know what’s going down for me right now.

Firstly I’ll tell you I’m feeling a little bit furious, a little bit sad, a lot tired and incredibly deterrmined.  This festive period is being defined by a new challenge in my life and that is to take on the current British government (not literally but you’ll see what I mean soon). I try not to be political on here but I will make no bones about my disgust and distaste for the current lot of clowns in Parliament.

I have watched from the sidelines for the past few years as more and more sick and disabled people have been thrown into extreme poverty and some have even died or taken their own lives (according to CAS this number is in the tens of thousands, yes you heard that right) due to Social Security reform in the name of austerity.  NHS Digital also report that in 2016 rates of self harm and attempted suicides for ESA claimants had risen by 43%.

I was watching knowing that eventually they would come for me.

When the brown envelope (brown envelope-itis is becoming a thing) dropped through my door I had to take a deep breath and centre myself before I opened it, I knew it was my turn on the merry-go-round. I filled in the form for PIP which is in itself a bit of an ordeal. Having to relive everything that has happened and  putting into black and white how different things are for you triggers stuff. All that stuff you’ve gone through and endured comes bouncing back up and straight out of your eyeballs.

Once this was done it was a question of waiting for the assessment. Ah the asssessment! Where one of the evil twins (ATOS or Capita, urgh!) send round a ‘health professional’ to ask questions, observe you and push for concrete answers to extremely abstract concepts – they also make you touch your toes (despite the assessor telling me that this part of the assessment wasn’t relevant to my condition she made me do it anyway then used it against me in her report). The assessment is not fit for purpose, it doesn’t factor in invisible disabilities. Yes I can touch my toes but I can’t get out of bed to do it!

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After waiting a few weeks for the outcome then being refused any sort of financial assistance I had a meltdown, a proper meltdown. It dredged up those feelings of hopelessness and uselessness as well as having thoughts  of suicide. Once the despair abated, then came the anger and determination, I was not going to take this lying down (well maybe I’d be lying down but I’d fight). So I researched the appeals process and began the frustratingly slow meander through the highways and byways of the Social Security system. I requested a copy of the assessment report (you can do this, it’s your right to know what was said) and it was like reading about a different person.

Now I’m not saying that an outsourced agency like Capita will lie about people, ah…. ok… yes that’s exactly what I’m saying. I’m also aware the staff get bonuses for every person they throw off benefits, sort of like a cruelty pay rise. The report could have won the Booker Prize for Fiction. It was full of contradictions and things I didn’t say as well as omitting things I DID say. I was also deemed not disabled due to being intelligent and aware of my condition, I MEAN, GIVE ME A BREAK that is the most outdated and Victorian attitude about the disabled I’ve ever come across. This idea that being disabled equates to some Quasimodo-like existence where we are not articulate and smart and funny. We’re either ‘inspirational’ people who beat the odds to win medals and row the Atlantic single handed or we are dribbling no hopers. There is no middle ground. Society wants you to be one or the other, no shades of grey. Heaven forbid you’re disabled and dare to scuttle out from your cave and try to have fun and enjoy your life.

So we are now locked in a festive waiting game. No decisions, no supplementary payments, no hope until after Xmas. As a knock on effect of PIP refusal Mr Braingirl has also had his Carers Allowance stopped so we are truly on our arses right now. BUT they will not beat us. I want to see this through, it will take all my energy and all my courage but we will go to court and have our say. If we fail, we will try again. I’m a working class Northerner which means I’m genetically predisposed to rolling my sleeves up and taking on the powers that be.

This is the thing with ‘austerity’, the rich and powerful have all they could want but they want even more and not only that, they want to stop you from having any too. They are creating a culture of ‘unworthy poor’ where having less is some kind of disease and something to scorn. They are deciding who to throw crumbs to but making them somehow ‘other’ in the process. Ably assisted by a media who help deflect your anger from where it should really be directed and instead make you angry at refugees, the sick, the disabled, the poor, the young and the vulnerable. Your brother or sister who is struggling and trying to access a lifeline that was created to help when circumstances beyond their control affects their life. This degrading and dehumanising system that is now in place was unfortunately voted for by the public, a section of the public who think society exists solely for themselves, the ‘I’m alright Jacks’ the ones who have lost compassion somewhere and forget that we are one, that we work together. The public who don’t really believe that this is happpening.

This is not something that is occurring in a film, this is real life. YES it is happening, NO it is not made up and it’s killing your fellow human.

4

Dream with the sun and the skies

There was a time in my hazy past in the period directly after my brain injury when the thought of being 5 years along seemed like an untouchable made up place. When I was sinking in quicksand every day, 5 years into the future was a place that was full of exhaustion and fear. Today I’m hitting that 5 year mark, and it is a liminal time for me. A time when the deja vu that is my anniversary effect whips me backwards and forwards out of the present and into dark corners. A time of contrasts – great sadness followed by gratitude followed by fear.

I’m still making baby steps in my recovery. I’m still traumatised and lost and I’m also still having moments when I conquer stormy waters. There have been little light bulb moments happening to me throughout the past 6 months especially. Moments of learning and acceptance of myself. Moments where the TBI comes and pokes me in the eye again and reminds me that it’s still hanging around.

An example of this is my inability to socialise like I used to. When I have the energy to be around others I’ve discovered that it feels like I’m from another planet. I am not neuro typical anymore, I can not do small talk and I have lost my brain to mouth filter. I find that a mixture of social anxiety, unwired neurons and the fact that I don’t get to talk very much so when I’m around others I can’t stop yakking, all contribute to some odd discussions. I say things out loud that I need to keep to myself, I interrupt others, I do not shut up and I’m unflinchingly honest and open. I am acutely aware that I’m verbally diarrhoea-ing over everyone and that I sometimes say things that make people feel a little embarrassed. The end result is I feel odd, out of place and weird. I then tell myself that people don’t want to be around me and listen to me and that I’m somehow not ‘normal’.

‘Normal’ is a funny word, we use it to describe the average persons daily activity and behaviour but I know that there’s not really such a thing as ‘normal’ anymore. I suppose I’ve always been a bit eccentric, a square peg in a round hole, since my TBI that has compounded. But here’s the thing, whilst in the past my eccentricities have been something I felt I needed to hide to ‘fit in’ (a mistake if there ever was one, I needed to celebrate my oddness), I now, most of the time, don’t care a jot. I was told a few weeks ago that I’ve gone ‘a bit strange’ my response to that was that maybe I’m the sane one.

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I want to own who I am and where I’ve been. I want to own the beauty in my life, the things that make me curious and joyful. My strangeness is my strength. My strangeness is my medal, I earned it my friends.  I’m a tree hugging hippy, I care about animals and people and the Earth so I live my values as a vegan, I believe in Magic, I think universal love is massively important and powerful, I have a head full of fanciful notions, I read tarot cards, cleanse crystals, talk to plants, believe in ghosts and see fairies. I talk too much, I can be a frightened rabbit, I wear pyjamas too much, I am fiercely loyal and incredibly stubborn, I grieve and cry, I am exhausted and I give up many times. I am all these things. I am dark and light, full of contrasts and imperfections. Isn’t it wonderful.

Happy 5th brainiversary Braingirl. You made it.